When will they learn?

[anonymous]

Last night we went to my Father's for dinner. We had family in town from out of state so it was a little reunion like outing. My grandparents have been kind enough to watch my eldest child while I take my CFer to appointments and such. Through all of out appts, fundraising and talk about CF with the family, my Grandmother said she saw an article in the paper about CF and she really thinks my CFer will 'grow out of it'. HUH??? Has she heard or comprehended anything that we've spoke about in the last year????? Honestly, I had to have a dumbfounded look on my face when I turned around and walked away. He doesn't look sick...so he must not be... <img src="i/expressions/face-icon-small-mad.gif" border="0">

Just had to vent for a second.

MB

 

[Emily65Roses]

Did you tell her that was the stupidest thing you've ever heard? I would have. Grow out of it... what a twit. Does she have Alzheimer's, or is she senile? Because there would be NO other excuse for being *that* dumb about it when she has a great-grandchild who has it.

 

[anonymous]

I have a family member who is just about as clueless as that. Sad thing is, he is a smart, educated guy but I think he just chooses not to believe the stats/facts... drives me nuts, especially when I hear him spreading his false information to others! I always correct him in front of other people bc I can't stand the thought of misinformation being spread!

 

[CFHockeyMom]

Unfortunately, there are people that will never learn. I'm a bit surprised to hear a comment like that from someone that's been so close to you and your CFer. When I hear people spew garbage like that (and I've heard my share) I've come to believe that they're saying it to make themselves feel better and don't actually believe it but want to believe it.

It is frustrating to constantly run across people that subscribe to the "looks good, everything must be fine" theory. We've got oodles of family like that and it really frosts me <img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[Emily65Roses]

Yeah I love that... I look pretty good, and I'm not even underweight, so I must be fantastic. Funny because I can't even laugh anymore without struggling to breathe for several minutes afterwards. Do you have that problem? No? Then shut up, because you don't know how I feel. Ugh.

It's like we look too healthy to be welcome among sick people... and we're too sick (whether we look it or not) to be welcome among healthy people. WE BELONG NOWHERE! Arg. <img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[JazzysMom]

I have told this story before. I have a first counsin who is a RN. She saw me somewhere one time & I had a coughing spell.....Her sisters (one of who has down syndrome) asked if I needed a drink etc. The cousin who is a RN said, "You still have that problem." I will give the benefit that she is not close to me even tho her Dad is my Godfather, but she is a RN for crying out loud!!!!!!!!!!!!!!!!!!!!!!!

 

[anonymous]

Melissa, that IS amazing since she is an RN - sheesh people! (very sarcastic voice here) Its too bad you "still have that problem" and your genes haven't just changed over the years - DUH!

 

[anonymous]

That would be the perfect response, " Yes, I still have that problem or no, I haven't grown out of it, for some strange reason my genes that I was born with just haven't changed, go figure!"

 

[anonymous]

I had a home health nurse last month during IV's who asked me when I caught CF? And if I had CF or CFRD first? She then went on to tell me that she knew a girl who had CF "since she was a little girl" and that I could be cured by taking the right kind of herbs. People are clueless.

 

[anonymous]

This is MB...I can see the ignorant statements from family and friends, (though I wish they would think before they talk) but when it is someone in the healthcare field, you really have to shake your head and wonder. I know that they cannot know everything there is to know about all of the illnesses out there, but grrr!

Emily, she's not senile. No alzheimers yet. TWIT does seem to fit the picture the best! lol Her and I have had our disagreements through my 31 years, so I have come to let alot of it roll. And out of respect for everyone around me I don't explode. Just take it out on my poor husband!

MB

 

[anonymous]

Unfortunately, I think most RN's, unless they've worked in PEDS (and even then not always), don't know about CF. I have a family member who is a school nurse (RN worked on oncology before becoming a school nurse). She'd never even heard of cf.

 

[anonymous]

Well, I've heard some of the same dumb comments but what bothers me most is that my very own mother, who fully understands CF keeps telling me she thinks my baby will NOT be born with it. The catch is I've had the amnio and baby has already been diagnosed with CF when I was 16 weeks pregnant, so I KNOW he has CF, what is the point of denial. And she knows I am not religious yet she keeps telling me she is praying the baby will not have it??????? WHAT is she thinking???????? I love her and understand her hoping the doctors are wrong but I see no point in this, I've come to terms with it why can't she. Baby will be born next week so I guess she will have to cope with it then for sure.
Jen

 

[anonymous]

It is always surprising when it comes from the people you least expect it from. I just found out last weekend that my mother still thought the life span was 12 and has been preparing herself for the day I just "keeled over." When I told her that no, it was in the thirties now and that my doctor said I have 20 more years, she got mad because she thought I was teasing her! It never even dawned on me that we never really talked about cf (other than clinic updates) since I went to college.

On the other hand, I studied for a semester in Scotland my last year of college and got sick. I was in a small little town, and was totally prepared with my cf speech for the doctor that I was sure would not know anything about my condition (based on experience with home doctors outside of the cf clinic, I suppose). It didn't help that the nurses all glared at me in the waiting room, because they did not think I looked sick enough to be there. Not only did the doctor know about cf, but it felt like I was home talking to my own doctor. I think I was still in a state of shocked awe when I left the office with my prescription!

Barb 33 w/cf

 

[anonymous]

My sister in law thinks its so cool that my son with cf can eat whatever he wants and never get fat!!!!!
so I said "I think is so cool that you barley eat anything and it goes right to your hips" I know really mean I couldnt help myself

Maggie

 

[rose4cale]

Maggie that is always so tempting to come back with comments like that! So funny!

A friend came and picked his daughter from our house and commented how Cale looks pretty good and must be 'easy to take care of'. They also have a son his age who towers over him but another -looks good must be ok- type of comment.

 

[Leosmom]

There are many persons in the health field that do not know specific illnesses. I have worked with a number of RN's that weren't aware of certain symptoms, average age span, etc. There is alot of information in the medical field. The individuals working in certian areas then become aware of there specialized areas(Oncology, Geriatrics, Internal Med, etc. I have been working in the medical field for awhile and am currently attending my final semester of Nursing school. I did not know what CF was until after the DR's started running test on my son and I researched the information of CF. I understand the frustration of individuals and their ignorance, but I also remember that I was ignorant of this disease until my son was diagnosed. People generally deny there is a problem with this illness. I have heard many people say, "Well won't he grow out of it?" just as others have heard this. Teaching is the best answer. Give these persons information that they can understand. Also, even if a person is educated does not mean they have common sense. It is great to let individuals know that you have this information, we as parents of a child with CF are a good source of education. Use your knowledge.

Okay, I'm off the soapbox. Hope that wasn't to bad.

DeAnn

 

[anonymous]

A once friend of mine that I no longer talk to had the gull to tell me that "if I just prayed to God and have faith, I would no longer have CF." I stopped talking to him immediatly.


Sean 27/m w/CF

 

[Emily65Roses]

Wow. I would've stopped talking to him too, but only after I slapped him in the mouth. Hah! <img src="i/expressions/devil.gif" border="0">

 

[anonymous]

Hey guys and gals,

hhhmmm my parents still blame me for her illness. "It must have been you drinking or smoking or maybe something else".....I never smoked, in fact it's been 6years since I've quit, I never drank during pregnancy except, I hate beer, but had a craving for it once in awhile. The doctor said it was the yeast. My cfer is 5 yrs, and they haven 't seen her in 3 months and we live five minutes away. I feel that alot of it could be that I am the black sheep of the family, have always done what I wanted and succeeded mind you, but sure enough if it's going to happen ( disease or illness) it would be to me. My fault, now my problem. It's hard, don't get me wrong but you know some emotional support would be nice once or twice without the ...... your house is messy, or did you have to have another child we can't stand, or my favorite from my sister..." I don't care if my baby is born with CF I just have to give her a pill, even down sydrome,, how ignorant is that. This is what I deal with, nobody thinks for a minute that I'm the one who will have to listen to my daughter struggling to breath with her double lung transplant or like my parents who won't have to, cause they will already be dead and miss the whole "Oh My God' what can we do for her? Funny how life goes, I now just totally cut the family out and have half the stress, it makes a big difference. Try it. I have to protect my children first and ignorance regarding their illness is not tolerable...so good bye losers!!!!!!!(my family) I feel better and my children will still be confident regardless and their self esteem will be amazing, I figure it is them the self serving grand parents and aunty who will miss out, not my children.
God Bless

N.

 

[rose4cale]

I find it so disturbing that parents/grandparents can so easily write off kids and grandkids, not only for illness but for stupid little things. My Mother has not invited us to her house in years. Not for the CF reason, I'm really not sure why. I invite her regularly and ask her to watch the kids about once in a while. It use to be more often but she comes up with the most lame excuses not to. I am sooooooo tired of hearing them. Then she will complain to my in laws that she never gets to watch the kids. I want to give up on her, but then I am just as guilty for writing her off. But she stresses me out so much I don't know what to do. (I don't think she likes kids in general...IMO)

Unlike the above poster (N.) though my family pretty much recognizes the kids and 'loves them just the same'. I would have a break down if they 'blamed' me for my childs illness. What an ignorant and unfair comment. I guess if they said things like that to me, I would have to dismiss them too. Your kids (and you) don't need that kind of negativity in their life. IF they can come around and apologize and ask for forgiveness then I would welcome them into my kids lives again, but not until they fully understand the pain that they have caused. Hopefully there is other family and friends that your kids can develop strong relationships with, because that is important for you and the kids!